The research group has been running for 15 years and currently has 7 members. They have conducted numerous research projects on topics important to people with learning difficulties like autism advocacy and keeping wartime memories alive. Their research process aims to be inclusive, interest-based, accessible, and useful to people. They emphasize ownership and equal participation of people with learning difficulties. Some challenges they face include limited time and money, physical distance between members, and having their research dismissed. They hope to continue publishing their work to educate others and promote inclusive research.

1. Today’s outline
 Introduction
 Keeping Wartime Memories Alive
 The History of People First Groups
 The Way of Life
 Autism and Advocacy
 Summary
 Questions
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3. About us...
 We have been running for
about 15 years
 We have 7 members at
present
 We have written and
published a number of articles.
 We have talked about our
work at Conferences at home
and abroad.
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4. How the Research Group Works
 Inclusive
 Uses everyone's skills
 Based on people’s interests
 Accessible
 Has to be of use to people
 Must not reject
“Research methods are anything that help us find out what
we are interested in. A lot of researchers have complicated
names for different types of research methods. What we want
to do is use the methods that are available to us and do not
complicate it. When things get complicated it puts people off.
Then they feel rejected.”
Elizabeth Harkness ‘We Are All in The Same Boat’ 2004
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5. Our Guidelines
 Our projects should always benefit people
with learning difficulties.
 We have ownership of our own projects.
 We are all equal as researchers in the team.
 People with learning difficulties are to be
employed on our research projects and earn
a salary.
 We will always review our projects and look at
good and bad points. We learn from our
mistakes.
 We will publish our work and get it ‘out there’.
This is the only way things will change!
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6. THE RESEARCH CYCLE
(Carlisle People First Research Team, 2001, in ‘Community
Living’ Magazine)
1.Why is this
important?
8. Go over what
2. What is already
we did and how
Known about this?
to improve
Are there gaps?
7. Draft and 3.Is there a
The Research theory
Writing/ accessible
Question/ or background
Formats -
Area of research ideas to
Get it out there
think about?
6. Analysis. 4. What are the
What does the accessible
information tell us? 5. Collect the methods?
Information/
fieldwork
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7. Planning with a PATH
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8. What have we done so far....
 History of People First Groups in the UK
 Support in UK self advocacy groups
 Autism and Advocacy
 ‘Keeping Wartime Memories Alive’
 Direct Payments Research
 Peoples life stories
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9. Oral History Project

10. About the project.

11. Our Methods

12. Interviews

13. Analysis
 Accessible Analysis – ‘what
have we found out from
what we found out!’
 Given Memories
 Finding Findings in
Transcriptions.

14. Results
 We didn’t find out what we
expected to find out!
 People’s lives had changed
at the same rate as other
Cumbrians without Learning
Difficulties.
www.peoplefirstcumbria.co.uk/resources

15. By
Lou Townson, Elizabeth Harkness and Rohhss Chapman
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16. Why the History project was
important
 Andy said “young people
‘don’t have a clue’ about
the people who had to live
in institutions!”
 Its important that we all
know the history so we
can change things.
 It was when the
institutions started to
close that people first
started up the self
advocacy movement.

17. The River of History
 Our self advocacy group began in September 1990. The group
members talked about their experiences and found out about
rights.
 We raised money to go to conferences and meet other people

18. Themes from the History Workshop
 Finding good places to meet was a
problem
 Members who had died had made
a big contribution to their groups
 Getting funding was difficult
 People were often bullied in
services
 There was never enough time to
support people 2nd DAY WORKSHOPS
 Different types of support made a 1. The history of rights, choice
difference and struggles in People First
 There were problems with services 2. The history of support in
 People were fighting hard for their groups and how it changes
rights. 3. The history of funding in
groups.

19. Talking to the groups about ways of
finding information
 Computers and the internet
 Listening
 Memory
 T shirts
 Diaries / old minutes
 Newsletters
 Conferences •Confidentiality
 Videos/ tapes •Making getting
 Meeting people information accessible
 Posters / photos •No jargon!
 Interviews

20. Action Plans

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22. Why I did the book...
 My ambition
 To be used as a learning resource
 To help people share their stories on what it is
like to have a disability
“There’s no shame in it because you were born
with it. It is just a learning disability”
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23. Dovenby Hall
“Professionals need to
know they’ve destroyed
people’s lives- the way
they come at you, talk
to you, saying things
like you can’t do
this, you can’t do
that, making decisions
about us. We need to
turn it all around.”
Malcolm Eardley, 2009
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24. Process of Research
 Used my best research skills
 Oral History
 Promoted and raised awareness of
research
 Qualitative – lots of detail
 Supported 3 people to write their life stories
 Interviewed 9 people with the label of a
learning difficulty
 Collated my findings in a book yet to be
published!
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25. What does the book tell us?
“Why do people always have to put a label on a
person with a disability.”
“Professionals destroyed our lives”
“They had all my records about me. I wanted
to have them because it was about myself
and what happened to me and all the
medical stuff and why they did it to
me and why I went into Dovenby.”
People with learning difficulties have lots of
skills to offer.
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26. Summary...
Similarities Importance
 Raise awareness to the general
 Getting people’s stories out there-
public- getting our research used.
our research is all about people
 Young people learn their history
 Our Research Cycle
and the movement of change
 We’re fighting against people who
 Research every stage- rejection
have made assumptions
issue
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27. Tensions and Challenges
 Time- priorities – we all have different jobs and roles!
 Distance- we work more than 100 miles from some of our team members.
 Keeping it accessible – ‘academic world’ is not always accessible…
 Status of our research - Gate Keepers / Our connection to People First in
Cumbria, and their history with services.
 People don’t listen or dismiss our findings – like at an Autism Awareness
conference.
 Partnerships? – Real Involvement vs. Tokenism
 MONEY! – there’s never enough!!
 Being involved in other projects can stop us from getting on with our own
projects, which is good and bad.
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28. Important Things That Could Help...
 Money, time and patience
 Educating and Sharing our experiences-
teaching more people about research
 Keep on publishing our work
 Using our research
 New partners
 Promote inclusive research full stop!
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29. Future Projects
 Relationships
 Dovenby Hall
 More Life Stories
 A project on networks and people.
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30. Questions....
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